Small Fiber Neuropathy, Sojgrens, Hashimoto's

Please make sure you are put on their waiting list. Sometimes they won't have one and make you call everyday. I'm curious why you were discharged from prior Rhemo's. I'm wondering if you had seen them for a specific problem that they felt they could no longer help you with. But now you are having a new problem and if they won't see you, that would be incredibly unusual. Particularly from two of these specialists. Was there some disagreement with diagnosis? I feel bad for you left feeling alone with a problem. Have you talked with your neurologist about dropping things? I had this issue and it ended up being from my cervical stenosis. Either way, if it is muscle weakness I would think your neurologist could help you with that by doing nerve testing to define what could be the issue. Best wishes in this new journey.

@penn. You can find a good rheumatologist by contacting a comprehensive medical center or university hospital somewhat hear you. Or you can call:
GARD ( Genetic and Rare Disease organization): https://rarediseases.info.nih.gov/
NORD (National Organization for Rare Diseases): https://rarediseases.org/
These organizations help those with autoimmune and other rare diseases. You can ask about finding a good rheumatologist in your area.
I know it can be hard to wait, especially when you hurt, so ask if you can get on their waiting list. I f someone cancels,you’d be in line to take the appointment.
What, specifically, do you want a rheumatologist to address?

@penn, have you had your cervical spine checked (X-ray/mri)? I was dropping things, too, and ended up being diagnosed with cervical spondylitic myelopathy. Trigeminal nerve can affect face/eyes/mouth, etc. I saw several rheumatologists and spent lists of money on blood work but they were not really helpful, other than ruling out RA/lupus. Good luck!

@penn, here are a couple links:

I have speaking/swallowing issues I believe are tied to nerve damage. My myelopathy spinal cord compression was at the c5c6 level and I needed ACDF surgery. It not only affected arms/hands but also affected my ability to walk and control my bladder. Anything tied to cervical spine and spinal cord is considered an urgent issue to address to prevent permanent spinal cord and nerve damage.

@penn, see TMJ picture below.

Have you had any MRI'S done?
I have neuropathy in my right hand.
The radiologist that read my MRI didn't note what the neurologist saw. So can't trust a report. You need to have specialist see the MRI'S

@jlnda I have had many MRI’s!! The report is always on the portal before my doctor even sees it. The radiologist may not have noted what the neurologist saw for 1 of several reasons: they didn’t see what the neuro saw; they called the neuro and discussed it; the neuro was just suggesting it so radiologist could double check. And the radiologists are THE experts in reading MRI’s.
Do you know if your neurologist has seen the films yet? Have you discussed it with them? Is there something in or on your hand that is bothering you?

What does the acronym ACDF stand for? Does it mean a Cervical Disc Fusion? Just guessing. I've had spinal stenosis for a long time as well as Degenerative Disc Disease. Mostly cervical. I have been having more and more issues concerning my balance, hand weakness, ear and neck pain. I also am having voice and swallowing issues. My shoulders have always been curved forward. Both shoulders now crack when I stretch and move my arms. I have had on and off Physical Therapy throughout the years. I Love to swim. When I swim my pain subsides. I have seen a Neurosurgeon who would'nt or couldn't do spine surgery on me due to being a Type 1 diabetic for 25 years. The risk was too high because my A1c wasn't at 6 or below. I was 42 when diagnosed with LADA (Latent Autoimmune Diabetes in Adults). At 40 I was first diagnosed with Type 2... Given Metformin that made me very sick until I was able to change Doctors. Given the correct test and diagnosis. Going from Insulin in glass and hypodermic needles to a pump ( for a short time) and now to sensors has been a big plus. My A1c was last at 6.8. I would like to hear from anyone who can relate and what their current choices have been to feel less pain. sandee

I was interested in your physical issues. I was literally reading my issues even shoulder curved forward dropping things. How/who informed you of the diagnosis name? I've been getting injections in my neck and lower back. I have many problems from autoimmune disorder.

@sand0409
It sounds like you have your cervical spinal cord and nerve roots being affected. ACDF is anterior cervical discectomy and fusion. My issue was spinal cord flattening due to congenital spinal stenosis and degenerative disc disease and it was affecting arm/hand strength/dexterity, walking, bladder control, etc. and caused issues with, balance, dizziness, headaches, shoulder/neck/upper back pain, swallowing, speaking, etc.

See a neurologist and orthopedic doctor that specializes in spine to determine if you have cervical spondylitic myelopathy. You would need X-rays, MRI, etc. and assessment of symptoms. It is urgent to take care of cervical issues as it can cause permanent, irreversible damage to spinal cord/nerves.

Praying you get the help you need asap!